TRIPLE POSITIVE GROUP
Comments
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ChickaD my BS ordered the PET scans because we had time before surgery and he assumed with the size of my tumor & being HER2+ I would have some node involvement making me stage III. I think because you are so early stage they may not do scans unless you have symptoms. I think it's more Stage III and/or node/LVI involvement that may get scans from the start. Did you ask your onc?
Shasha I'm not sure if there's enough data out there for that but remember that many women never got Herceptin years ago yet many are still alive and NED today.
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Sasha: I only had 10 Herceptin infusions and both oncs tell me that is probably enough. I only had 4 TCH and only 3 of the 4 were accompanied by the Herceptin. I'll just believe them that the 10 treatments was enough. I'm hearing now that if they slow it way down, the impact on the heart isn't as bad.
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Thank you. My next echo is in 2 weeks and I want to be prepared, if it doesn't resume. It is after all the miracle drug for her2+ so it's very disappointing to stop.
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Love our official song! 😃
Ashla, you've a good memory - I'm going to Dublin on 30th.
PET scan 19th, results/ onc appointment 24th, so hopefully I'll be going to see my family with good news!
Nicky0 -
Does anyone know how long u should wait after chemo and surgery and radiation to get hysterectomies?
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Goutlaw I think the Drs. make that decision, I know during my chemo they stopped it for me to have an operation so it's up to u'r Dr. no doubt
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goutlaw - your OB/GYN would need to detrmine if you have been done with chemo/rads long enough for healing to take place. Chemo drugs inhibit healing, so it is important when considering a major internal surgery.
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I am sitting in my Onc office waiting for my 4 month follow up. Don't have too much to ask him about this time. I am going to start my lobbying for extensive followup testing at my 3 year mark in February. It will take that long.
Regarding testing....I browbeat mine onc into a pet scan a year ago. He told me not to ask again for two years. I'm giving it until Feb. He doesn't believe in followup for early stage. I do. BS checked out lump on incision line manually and with ultrasound. She said she is 99.9% positive it is scar tissue. Will check me again in December. I asked her about MRI for followup. She said the big issue is insurance won't cover it a lot. Said if I can get it covered, she would order it. That is on Feb plan if I fail with the PET lobbying plan, lol.
Art....I had weekly taxol for twelve weeks. I don't remember if she is having anything else in her regimen, but it was reasonably tolerable. Herceptin was mixed in, and the. Went to herceptin every three weeks. Had to tweak the infusion time then to 90 minutes instead of 30 to help with side effects. You are a great husband.0 -
Whats the difference in a PET scan and a CAT scan?
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Question for this knowledgeable group--Ever since finishing chemo, I have been dealing with facial angioedema. It was happening maybe 2-3 times a week until I finally started just taking an antihistamine every morning. I asked my NP at my herceptin appointment whether chemo caused allergies and she said of course it did. She said they essentially took my immune system and stuck it on a paint shaker (she's a hoot!)
So I started thinking about it. When I was in the hospital after the first chemo, my white cell count went down to 0.2. That includes my plasma cells with the memory for immunity to all kinds of things. My question is, does anybody know if I would no longer be immunized to things because the chemo killed the cells that hold the memory for immunity? Does this question even make sense?0 -
Pbrain,
That's a really good question! I'm sorry I can't answer it, but now I want to know the answer too!!
I was very lucky, the whole way through chemo my blood counts stayed well within the normal range - to the extent that my onc always comments that to look at my blood results I'm in extremely good health!
Nicky0 -
pbrain - can they titer you to find out?
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Hi, Shasha. I have been researching the benefits of shorter treatment schedules for herceptin, with just not much luck. For one thing, there have only been a few clinical studies about optimal duration. Otherwise, not much info that I could find. I did find this one intriguing comment in an article about DCIS on the M. D. Anderson (a major cancer research center in Texas) website:
"According to Dr. Kuerer, a recent study at M.D. Anderson showed that one intravenous dose of trastuzumab can induce a strong immune response in patients with DCIS." ww2.mdanderson.org/depts/oncolog/articles/10/1-jan/1-10-compass.html
Can they say the same for invasive cancer? I don't know. One whole year of herceptin seems like a whole lot more than necessary for stage 1, node negative, clear margins, after chemo and radiation, plus 5 years of AI. How much herceptin does it take to bind to the cancer cells that managed to survive all that? Just wonderin'.
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Anyone familiar with mycocytosis? My friend who is Triple Negative (and whose doctor didn't see her for a follow up for a year) is told she has it. Mixed information on it!
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Arlene, do you mean macrocytosis {enlargement of the red blood cells}? I don't think this is uncommon with chemo because the body is trying to pump out as many cells as it can so it sometimes {often} sends cells out that are not at the optimal size, either not fully formed {for example baby neutrophils}, too small or too large. In this case, it's the body's attempt to compensate for having less RBCs by making the ones it does have larger so that oxygen can still circulate in the blood. It's one of the signs of a certain kind of anemia {pernicious anemia}, however, in this case it's likely medication related and not really how the body was originally and it may correct itself in time, or with B12 shots or something.
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TwinMama: Yes, but she finished chemo a year ago???
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Oh I'm sure PBrain will explain this, I do know it has something to do with abnormal red cells orsomethings amiss, it could even have something to do with anemia, but this is me talking so wait for someone who knows. LOL Oh I see there was an answer but I thought macro had to do with anemia., not micro
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It can take a LOOOONG time for the body to get back to normal. Do you know if she takes B12 or gets B12 shots? That would be an initial treatment for it. I know that my RBCs are currently enlarged and that anemic feeling is certainly no fun. :~/
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Cami: Thank you! She's so worried she has liver cancer. My concern is that her ONCO in the beginning told her Triple Negative was the best to have but I suppose she could have misunderstood.
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My toe big one is black on side like a blood blister is this from taxol?
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TwinMama: She does not but she plans to begin taking B12. Her next appointment isn't until November.
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I doubt it has anything to do with liver cancer, stress on the liver due to the massive amount of drugs pumped through it possibly, but probably not cancer. Here is a link to the mayo site {one of the only I will trust to google}. Notice what is says about chemo and also about the body trying to correct anemia.
http://www.mayoclinic.com/health/macrocytosis/AN01287
Is it possible that your friend's onc told her that triple neg generally responds well to chemo? Because that's true.
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Arlene there is the condition microcytosis also so if that what u mean, it is the red blood cells but I'm not sure I think they are smaller by ratio or something then like I said the macro is the other thing
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Reading about increased cardiovascular risks associated with all types of breast cancer treatments. Finally getting studies albeit small ones that they are widespread and can occur way out.
Elevated bps, weight gains including increased fat to lean muscle, higher heart rate, bmi and they didn't even mention herceptin EFissues!
I plan to insist on heart monitoring despite my mo's claim that I don't need it.0 -
Miss Ashla...where are you reading the heart info....just interested because I feel like my heart is not working properly...severely winded after this last chemo, etc etc...going for chest xray and tests to see whats up.
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Chick tell u'r Dr. but remember Chemo is very tiring for most and some are just totally exhausted like u've been running around all day and u'r just at the end so do what he Drs. recommend, but I wouldn't worry yet--Getting chemo for me was every step was a hardship--but that was just me.
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I had en echo pre chemo and just had another pre herceptin yesterday . EF remains the same . Taxol / Herceptin tomorrow 1st of 12 , really nervous .
BTW , I love our theme song .
Health n Happiness to all !0 -
Momx2 we all know u'r nerveous, hopefully it will go good for u, not everyone gets everything some have an OK go at this. So u've got everyone here to help u.Good Luck.
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Momx2
I got through chemo relatively unscathed including cardio matters and I had the 3 week doses! Boredom... Infusion time was boring. Bring stuff to do.
Best wishes.0 -
ChickaD,
I'll try to link but the article was referring to long term risk as a result of rads to heart, weight gain, increased fat ratio due to hormone changes etc. etc.
But you should report any worrisome symptoms to your doctor .0
